Robert - Brain Tumor

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The Story of Robert

My story:

My husband, Bob, was diagnosed with a brain tumor on May 16, 2004.

Bob's tumor is located in his right occipital cortex, the area of the brain that controls vision. The diagnosis was made after he began having visual seizures (he would see a kaleidoscope of colors and lights in his right eye). Since he was born blind in his left eye, visual issues with his right eye are taken very seriously.

Bob started having MRI scans every 3 to 6 months to check for tumor growth. After every MRI we were told the same: "No Change." And we were elated!

This all changed on June 13, 2005. After his routine MRI in Florida, Bob's Neuro-Oncologist informed us that there had been tumor growth and it actually has been happening all along. We were shocked. Until that day, the radiologist routinely compared the newest MRI with the one taken months prior. Since the tumor grows so slowly (about .5 mm a month), no one noticed its change until the Neuro-Oncologist compared the scan from June, 2005 to the very first scan taken in July, 2004.

Because the tumor was growing, Bob decided to have it removed. We traveled to Ronald Reagan UCLA Medical Center for surgery with Dr. Linda Liau on September 12, 2005. Bob has been under Dr. Liau's care for three years now. In May of 2008, he underwent a second surgery to remove tumor re-growth. After surgery, Bob's pathology report indicated that the center of his tumor had evolved to a more aggressive stage - a Grade III. Not the best news, but on the same token, it qualified him for the Brain Tumor vaccine trial at UCLA.

Bob and I are both still numb to the news. We are not sure how to take it. The good part is that he is now in the trial, but this also puts him only one step away from a Grade IV (what Kennedy has) which can be terminal and a median survival rate of 14.8 months. That is unnerving.

Bob has started the Brain Tumor Vaccine Trial. His first injection went well. He will have 2 more injections bi-weekly then he will receive booster shots every 3 months.

We have started to raise funds to expand brain tumor clinical trials to include low-grade brain tumors and pediatric patients. These clinical trials are showing great success; therefore, we are committed to expanding these trials.